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Experiences with
Pegasys
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ET/PV/MPN-U
I have now started
Pegasys
45mcg every other week- on the suggestion to go low and slow.. If I had relied solely on information on the web the possible side effects would have terrified me but the supportive forum here gave me the confidence to give it a go.
I have now started
Pegasys
45mcg every other week- on the suggestion to go low and slow.. If I had relied solely on information on the web the possible side effects would have terrified me but the supportive forum here gave me the confidence to give it a go.
Mookat4
in
MPN Voice
10 months ago
Outcome after 4 years of weekly Pegasys injections for PV.
After 4 years of weekly injections of
Pegasys
, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms.
After 4 years of weekly injections of
Pegasys
, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms.
Manouche
in
MPN Voice
1 year ago
Drug insurance that covers Pegasys in US
Does anyone in US on Medicare have a drug plan that covers
Pegasys
or has a low copay? I need to change my drug plan this year.
Does anyone in US on Medicare have a drug plan that covers
Pegasys
or has a low copay? I need to change my drug plan this year.
Doxy46
in
MPN Voice
1 year ago
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Risks of Pegasus?
I asked my consultant about changing to
Pegasys
but she said that interferons are not advised for the over-60s. Is this right? Why would my age make any difference? And will I be risking my health if I go ahead with
Pegasys
?
I asked my consultant about changing to
Pegasys
but she said that interferons are not advised for the over-60s. Is this right? Why would my age make any difference? And will I be risking my health if I go ahead with
Pegasys
?
Sivasi
in
MPN Voice
1 year ago
jakafi and Pegasys combination for Myelofibrosis
Does anyone have both Jakafi and
Pegasys
? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Does anyone have both Jakafi and
Pegasys
? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Yanico
in
MPN Voice
1 year ago
Drop Hydroxy for Pegasus?
I started on
Pegasys
, 45mg, six weeks ago and my consultant told me to continue with Hydroxy also, 500mg daily. After the first 4 weeks my platelets were up to 810. He's now increased the dose to 90mg Peg and told me to stop taking the Hydroxy.
I started on
Pegasys
, 45mg, six weeks ago and my consultant told me to continue with Hydroxy also, 500mg daily. After the first 4 weeks my platelets were up to 810. He's now increased the dose to 90mg Peg and told me to stop taking the Hydroxy.
Sivasi
in
MPN Voice
1 year ago
Tolerant to Hydrea, giving Pegasys another try....
I got off of
Pegasys
in March because I was starting to feel "down" and massive fatigue, but we are giving it another try on a low dose. We think I'm growing tolerant to Hydrea. My Dr said that they are seeing this a lot with ET patients. But we want to try
Pegasys
again before Anagrelide.
I got off of
Pegasys
in March because I was starting to feel "down" and massive fatigue, but we are giving it another try on a low dose. We think I'm growing tolerant to Hydrea. My Dr said that they are seeing this a lot with ET patients. But we want to try
Pegasys
again before Anagrelide.
Zeppelin11
in
MPN Voice
1 year ago
Pegasys --> Besremi and HCT
I recently made the jump from
Pegasys
to Besremi. I was on 135ug every 9 days without need of supporting venesection (at least for the last 8 months or so).
I recently made the jump from
Pegasys
to Besremi. I was on 135ug every 9 days without need of supporting venesection (at least for the last 8 months or so).
Swede99
in
MPN Voice
1 year ago
Quarterly follow up - switching to interferon
My hematologist wants to begin
Pegasys
in conjunction with HU for a bit and gradually transition to
pegasys
only. Any of my CALR people have experience with
pegasys
? I am interested in what to expect..
My hematologist wants to begin
Pegasys
in conjunction with HU for a bit and gradually transition to
pegasys
only. Any of my CALR people have experience with
pegasys
? I am interested in what to expect..
dbus1417
in
MPN Voice
1 year ago
Traveling with Besremi or Pegasys
Hi, If you are currently taking Besremi or
Pegasys
and planning a vacation during the summer you may have concerns about traveling and keeping your medicine cool and within the recommended temperature range.
Hi, If you are currently taking Besremi or
Pegasys
and planning a vacation during the summer you may have concerns about traveling and keeping your medicine cool and within the recommended temperature range.
JohnSC
in
MPN Voice
4 months ago
pegasys and migraines
I never had migraines prior to taking
Pegasys
. I will speak to the hematologist, but I need some thoughts before I do that. Thanks for any input.
I never had migraines prior to taking
Pegasys
. I will speak to the hematologist, but I need some thoughts before I do that. Thanks for any input.
Smithjoa
in
MPN Voice
1 year ago
Anyone taking Anagrelide w/ ET+CALR?
My platelets are in the millions so we are giving
Pegasys
another try but I'm dealing with some unpleasant side effects (already) and it's only been two weeks (dizziness, headaches, brain fog, fatigue, shortness of breath, irritability).
My platelets are in the millions so we are giving
Pegasys
another try but I'm dealing with some unpleasant side effects (already) and it's only been two weeks (dizziness, headaches, brain fog, fatigue, shortness of breath, irritability).
Zeppelin11
in
MPN Voice
1 year ago
in search of MPN specialist
I am especially interested in a Specialist who has worked with both
pegasys
and rux. I am hoping to be able to do online visits.
I am especially interested in a Specialist who has worked with both
pegasys
and rux. I am hoping to be able to do online visits.
Island-Lady
in
MPN Voice
1 year ago
Coping in the heat
Hi, i have finally got a diagnosis of ET and have started on
pegasys
, fourth injection this week. It has been warm here the last couple of days and I have found work to be extremely exhausting. Does anyone else suffer in the heat? I work in a lab so need to wear a labcoat.
Hi, i have finally got a diagnosis of ET and have started on
pegasys
, fourth injection this week. It has been warm here the last couple of days and I have found work to be extremely exhausting. Does anyone else suffer in the heat? I work in a lab so need to wear a labcoat.
Scarlett500
in
MPN Voice
1 year ago
castor, oil patch
I’m not sure if we can do this being on
pegasys
just interested if anyone has done this
I’m not sure if we can do this being on
pegasys
just interested if anyone has done this
Nc3500
in
MPN Voice
1 year ago
fragile skin
Random question to you all….I have ET, I’m on
Pegasys
and have been for a few years, I also take aspirin. This year I’ve been bitten a lot (I have always been a tasty meal for little bugs!) and whilst I try not to scratch the bites we all know that sometimes it’s not possible.
Random question to you all….I have ET, I’m on
Pegasys
and have been for a few years, I also take aspirin. This year I’ve been bitten a lot (I have always been a tasty meal for little bugs!) and whilst I try not to scratch the bites we all know that sometimes it’s not possible.
NCB1983
in
MPN Voice
1 year ago
Has anyone gone from Pegasys to Besremi?
So, has anyone been on
Pegasys
and then been switched to Besremi? What was that like? And what is it like to go on Besremi and were people started at that dose?
So, has anyone been on
Pegasys
and then been switched to Besremi? What was that like? And what is it like to go on Besremi and were people started at that dose?
ET625
in
MPN Voice
8 months ago
Ability to work
He can't say how lng I have to stay on
Pegasys
. I know it is what it is, but I can't help and hope that I can go back to some sort of "normality". Thank you very much for any advice. Mary
He can't say how lng I have to stay on
Pegasys
. I know it is what it is, but I can't help and hope that I can go back to some sort of "normality". Thank you very much for any advice. Mary
JustKeepSw1mming
in
MPN Voice
1 year ago
Pegasys, EMA application Extension of indication to include treatment of Polycythaemia Vera (PV) and Essentialthrombocytosis
Pegasys
is mostly used off label for MPN, but it is prescribed and reimbursed for MPN in many countries. What would be the motivation for Pharma& to start this procedure in this stage? And has the application been accepted, or is there information available on how this is treated?
Pegasys
is mostly used off label for MPN, but it is prescribed and reimbursed for MPN in many countries. What would be the motivation for Pharma& to start this procedure in this stage? And has the application been accepted, or is there information available on how this is treated?
Bariton
in
Fight MPN
9 months ago
Timing of side effects of Pegasys
Has anyone had to request a lower dose or experience of titrating backwards on
pegasys
? I am keen to stay on
Pegasys
(Besremi is not yet approved in Canada) and welcome suggestions. Cheers Cheryl
Has anyone had to request a lower dose or experience of titrating backwards on
pegasys
? I am keen to stay on
Pegasys
(Besremi is not yet approved in Canada) and welcome suggestions. Cheers Cheryl
C2Cnext
in
MPN Voice
1 year ago
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